Enable families to be informed about diseases and access to advanced medical care.
In addition to the care, protection and measures which can be taken to slow the progression of the disease.
The prevention of occurrence of terms of new cases in the family.
Enable affected families to communicate with each other, help them break the social isolation engendered by this disease and provide support, moral and material support if necessary.
Advise, assist and help parents and patients to the granting of the disability card and to benefit from social welfare means among different agencies: Ministry of Social Affairs, Mutual, insurance, …
Allow children with meet, to exchange experiences, to support each other, play and thrive Get real government social care of this disease (repayments, schooling, recreation and culture …)
Try setting with physicians, researchers and professional solutions balancing protection and quality of life.
In collaboration with public bodies, doctors and scientists, the association participates in the identification and prevention of the disease.
Support for research in developing a gene therapy or other research programs to improve the management, prevention and understanding of this pathology.
Fundraising to carry out this mission.